From 21 to 27 June 2021 the UK charity for children and young people who are expected to have short lives, Together for Short Lives, is joining with children’s hospices like Rennie Grove Hospice Care to raise awareness during its annual Children’s Hospice Week. The aim of the week is to highlight the huge challenges faced by some of the UK’s most vulnerable and seriously ill children and families as the country takes hesitant steps to leave COVID-19 restrictions behind.
Reflecting the national theme for the awareness week, Sam Howard, our Director of Nursing and Patient Services, explains why our care is more important than ever for families of children with life-limiting conditions who have been ‘pushed to their limits’ during lockdown:
“Caring for a seriously ill child 24/7 at home can be exhausting, lonely and isolating, and after a year of restrictions and cancelled appointments, families need support more than ever.
“Many of the families we support are no strangers to social isolation because of the vulnerability of their children. But the pandemic brought additional fears, pressures and challenges, many of which have had knock-on effects on the health and wellbeing of children and their wider families.”
Shailza and Daniel, parents to Riley (8) and Stanley (7), shielded during the first lockdown but kept in regular contact with our Hospice at Home nurses throughout. Riley’s muscle spasms had become more frequent and intense just as the pandemic hit, and with potential new treatment delayed as a result, he needed urgent pain relief in a children’s hospice, coordinated by our Children’s team.
By September, when Stanley was hospitalised for five days with a severe chest infection, Shailza and Daniel decided they needed the added support of the nurses in their home again, and visits resumed at their request.
“Isolation is the norm for us,” says Shailza, “but we wouldn’t have got through the lockdowns without the Rennie Grove nurses.”
Mum-of-four Melanie agrees: “Hospital visits during the pandemic have been really tough. Being the only adult allowed to accompany your child – you really feel the full weight of that responsibility.”
For Mel, having specialist nurses at the end of a phone to share that responsibility has been a huge relief.
Children’s Nurse Sarah Mobsby saw first-hand the challenges families faced during the pandemic.
“Families felt we were the one constant source of support throughout. Their routine appointments were cancelled and community children’s nurses were redeployed across hospital wards to care for COVID-19 patients. But thanks to our generous donors, our support never stopped.”
Our children’s team were able to visit families at home throughout the pandemic, although some families opted for remote assessments and support initially. Sarah and her colleagues continued to provide practical, emotional and specialist support, liaising with other healthcare professionals, arranging treatment, prescriptions and additional support as needed.
But Sarah admits the restrictions have been hard because many of the children she and her colleagues care for rely on facial expression and touch to communicate. “I’ve found it hard myself when all I’ve wanted to do is give a distraught parent a reassuring hug,” she says.
With many children’s hospices predicting a drop in income but increased demand for support this year, our care remains critical to children’s health and wellbeing.
Find out more about our Children’s Hospice at Home Service by reading Shailza's story here and Mel’s story here.